Support built for people diagnosed before 50, and the partners beside them.
Book a free 15-minute callMost Parkinson's information is written for people in their 60s and 70s. If you were diagnosed younger, a lot of it does not fit. You may be working full time, raising kids, or starting a relationship. You are planning for decades, not years.
About 10 to 20 percent of people with Parkinson's are under 50 when they are diagnosed, according to the American Parkinson Disease Association. This page brings together support made for you.
The main symptoms are much the same at any age. The path often is not.
Doctors may not expect Parkinson's in a younger person. Stiffness can get blamed on arthritis or a sports injury first.
Parkinson's tends to progress more slowly in younger people.
Younger people are more likely to have uncontrolled movements after years on some medicines. That can change when and how treatment starts. Talk it through with a movement disorder specialist.
This is more likely with a family history. Ask your doctor or a genetic counselor whether testing makes sense for you.
Work, money, kids, and relationships are all in play. When to tell an employer, a child, or a new partner is a big decision.
Sources: Michael J. Fox Foundation, American Parkinson Disease Association
Groups for younger people talk about work, parenting, and relationships: the things that matter at your stage of life.
| Group | When | Good to know |
|---|---|---|
| Triangle YOPD Connections (listed by Duke) | 1st Wednesday, 7:00 to 8:30 PM | Online. For people with young onset Parkinson's and their care partners. Topics include parenting, careers, and relationships. |
| YOPD Support Group (Parkinson Association of the Carolinas) | 3rd Thursday, 1:00 PM | In person or on Zoom. Register on their site. |
Ellipses is not affiliated with these groups. We list them to help families find support. Please confirm details with each group.
Not the right fit? Ask your neurologist, or call the Parkinson's Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636).
A backup plan still helps, like a different schedule or a different role.
If and when you do, a plan for who to tell and how can make it easier.
The Americans with Disabilities Act covers many job changes, called accommodations. The Job Accommodation Network gives free advice on what to ask for.
Review savings, life insurance, and disability coverage while things are steady.
Helpful guides: Navigating the Workplace with Parkinson's (Michael J. Fox Foundation) · Work and Benefits (Michael J. Fox Foundation) · Parkinson's and job accommodations (Job Accommodation Network) · Employment and Parkinson's (APDA)
Use words that fit their age, keep it honest, and leave room for questions.
Ask a few friends or neighbors to cover rides and babysitting on hard days.
Talk openly about now and later. Partners carry a lot too, and they need support of their own.
Some people are raising kids and helping aging parents at the same time. A social worker or care coordinator can help sort out options.
Helpful guides: Talking to Children and Teens about Parkinson's (Michael J. Fox Foundation) · Parenting with Parkinson's (APDA)
Diagnosis, treatment choices, work, family, and money.
Read the guideTheir guide for people diagnosed before 50.
Read the guideAn overview, plus recorded webinars from their young onset council.
Read the guideThe medical, emotional, and social side of a diagnosis between ages 21 and 50.
Read the guideYoung onset means a long road with a full life alongside it. We help you build a plan for the whole picture, not just the medical side.
Every plan starts with a free 15-minute call. Your Domain Assessment then looks at nine areas of life, built on the social determinants of health. They include money and insurance, legal planning, emotional health, and support for your partner. Your Care Map spells out your top priorities, with checklists for this week, this month, and the next 3 months, and resources matched to your needs. On our monthly plans, we re-evaluate your Domain Assessment and Care Map every 90 days. We work by phone and video.
Your Domain Assessment and a written Care Map.
Monthly check-ins and research to help you carry out your Care Map.
A coordinator who works with your providers, handles scheduling, and meets with you monthly.
Everything above, plus crisis planning and work with your attorney.
More support for Parkinson's families.
Start with a free 15-minute call. We will listen, and help you take the next step.
Book a free 15-minute callOr call (984) 362-8904
Based in Wake Forest, NC. Care coordination and coaching by phone and video, nationwide. Therapy for North Carolina residents.
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